NICE guidance on end of life care for children aims to end inconsistences in treatment

An estimated 40,000 children and young people are terminally ill in England. The quality of care they receive varies across the country. Draft guidance recently released from NICE (National Institute for Health and Care Excellence) outlines what the best palliative care for children looks like.

It emphasises the need for infants, children and young people to be treated as individuals and highlights the importance of children and their families being involved in decisions about care. Dr Harrop, interim chair of the NICE guideline committee added: “This draft guideline sets out best practice for all those involved in palliative care, whether that be at home, in a hospice or in a hospital. I hope it will further embed the good practice in palliative care for which the UK is already renowned.”

Play and art as communication

It is key that children are given information in formats they can understand so NICE recommends using music, art and play. Play is ultimately fun and enjoyable for children and it offers opportunities for social, emotional and physical development. Music can have a profound effect on our mood, it can lift our spirits and calm our nerves.

Views of the child and family are vital

The Parliamentary and Health Service Ombudsman published a report in May 2015, which identified poor communication as a major contributing factor to people receiving poor palliative care in England. Poor pain management, a delay in referrals and a failure to recognise when the person was in their final days are all highlighted in the report, which calls for people to be able to die with dignity.

Mrs Zoe Picton-Howell is a lay member of the NICE guideline committee, who lost her son Adam in March 2015, when he was 15. She said: "To me, my husband and our son Adam (when he was alive), the most helpful thing was to have healthcare professionals who took the time to listen to Adam. When we worked together Adam got the best care possible, but if a member of the team thought they knew best and became uninterested in what Adam wanted, his care tended to be bad."

Clear communication is essential

All information should be tailored to children and young people. It should be age appropriate, presented in accessible language and any questions raised should be explored through art, music and play. Therapists might be able to use drawings and pictures to understand where the child would prefer to be cared for. Home is often assumed to be the place most children would prefer to die. However, if the child is in pain or is experiencing problems with their breathing, they maybe more comfortable in hospital receiving medical support.

For more information on these guidelines please visit the NICE website.